Author

Degree

Doctor of Education

Program

Education

Supervisor

Dr. Gus Riveros

Abstract

This qualitative study investigated how advocacy groups for rare chronic health conditions understood their relation to, and interaction with, educational leadership and policy. This study adopted a critical research orientation and framed inclusion as an equity and social justice issue. Semi structured interviews were conducted with advocates representing various rare chronic health conditions, and a policy review of Ontario’s inclusion policy, as well as relevant health policies were conducted. The analysis revealed that there was tension in participants’ understanding of inclusion, and participants did not always support full inclusion for students with rare chronic health conditions. There is a lack of knowledge and understanding on the part of the education system about rare chronic health conditions, and a lack of connection between the medical and educational systems. A lack of policy to address the needs of children with rare chronic health conditions was identified, as well as diversity in policy enactment between school boards and schools. Recommendations were made, including further examining current inclusion policy in Ontario and elsewhere for potential policy gaps for including students with rare chronic health conditions, better leveraging advocacy organizations to act as knowledge brokers for education systems, creating better connections between education systems advocacy organizations, and re-examining both the allocation and the role of educational assistants in promoting inclusive classrooms for students with rare chronic health conditions. Future research directions are suggested, including further examination of inclusive schooling, evaluating the ways in which barriers exist for inclusion of students with rare chronic health conditions, and further understanding parent, educator and educational leader perspectives on inclusion for students with rare chronic health conditions.